Chapter 8 - Current challenges

Key points

If the prevention of a silent epidemic of AF-related stroke is to be prevented, it is vital that we address the following barriers to reduced stroke risk:

  • Insufficient detection and diagnosis strategies
  • Low patient awareness and understanding
  • Limitations of current treatments
  • Incomplete knowledge among healthcare professionals
  • Inequity of patient access to effective management
  • Insufficient communication to ensure a continuum of care for patients
  • Guideline differences and low guideline adherence

As has been discussed at length in this report, there are many and varied obstacles to the effective prevention of stroke in AF patients. This chapter identifies and summarises seven major challenges to effective stroke prevention among AF patients, as captured above in the key points.

Insufficient detection and diagnosis

Without effective detection and diagnosis of AF between a third and a half of patients affected will only be identified once it is too late; having suffered a potentially debilitating or lethal stroke. If a lack of detection and diagnosis continues, then many patients will be denied the opportunity to benefit from treatments that can dramatically reduce their risk of stroke.

Strategies are urgently needed to improve detection and diagnosis of AF. Existing research suggests that routine pulse screening has a role to play, 139 as does public education on the need to investigate an irregular pulse. Any solution will need to involve promoting pulse checks among the general public and the importance of having an irregular pulse investigated. The role and value of screening programmes will need serious review, especially following the positive results of the SAFE study 139. Many pieces are already in place; NICE already recommends that all patients with an irregular pulse receive an ECG to make a diagnosis and the SAFE study uncovered the marginal additional costs of taking a manual pulse.

The SAFE study also found that GP and practice nurse performance in interpreting ECGs was not encouraging, 139 identifying another potential challenge to the effective diagnosis of AF in primary care.

Low patient awareness and understanding

Wider access to information

Many patients have poor understanding of AF and of the treatments they take because of it. We know from one study that 37% of documented chronic AF patients were unaware that they had AF and nearly half didn’t know why they were taking warfarin. A similar number didn’t know they were at risk of clots that could cause stroke. Sixty percent felt that their underlying condition (AF) was not severe. 140

These findings are backed up be other sources including surveys of patients from patient advocacy organisations and from qualitative research among patients.

An extensive international survey conducted by the patient organisation, AntiCoagulation Europe (ACE), revealed that a quarter of the surveyed patients did not remember receiving any information on AF at diagnosis, and over one-third felt that their doctor could have told them more regarding their medication and how it would affect their lives. Particular lack of awareness among patients was noted with regard to the potential interactions of warfarin with common over-the-counter medicines and herbal remedies. 141

From a qualitative study of AF patients’ experiences it is clear that the above findings should not have been surprising. The study reported common and disturbing patient experiences during particular phases of the pathway of care. All patients involved in the research had AF which was both recurrent and symptomatic. Before being diagnosed, patients reported confusion and fear of symptoms, and were often puzzled during a search to understand what they meant. Patients reported that frequently no explanation of symptoms was given by healthcare professionals, and that symptoms were dismissed as ‘panic attacks’.

At diagnosis, patients reported relief, hope for the future and validation of their search for understanding of the symptoms. However, the time of diagnosis was also associated with many less positive experiences with healthcare professionals:

  • Lack of information and support from healthcare professionals
  • No education of the course of AF, or information on what to expect in the future
  • No acknowledgement of the negative impact that symptoms were having on patients’ lives
  • Inadequate education on how to manage symptoms

Following the initiation of management, a new range of negative patient experiences were reported. The unpredictable recurrence of symptoms was associated with distress, anxiety and a loss of control. Recurrent symptoms were commonly associated with a perception of treatment failure and accompanied by a fear of suffering a debilitating stroke.

So not only are patients are not receiving or retaining information during consultations with their doctors, there is also evidence that AF patients feel abandoned, dismissed, without support and without understanding at the hands of the healthcare professionals charged with the care of their AF. 28

Better adherence to therapy

According to AntiCoagulation Europe, adherence to therapy is strongly dependent upon patients’ understanding of their condition. Without the proper information or guidance, adherence can be poor, leaving patients at risk of bleeding or stroke. This report is supported by data showing that adherence to warfarin therapy increases when patients are supervised and have easy access to professional support. 142

We know that AF patients in routine clinical care were able to maintain a target INR for over half the time (56%). Of the considerable remaining time, patients were above the target range for 30%, and below the target range for 14%. 143

Insights into these research findings were uncovered by the ACE patients survey. It was found that, while nearly three-quarters of patients knew their target INR, over a third believed that being outside the target range had no major effect on their health. Only 30% of patients had been in their target INR range in all of their last 5–10 monitoring sessions, and 7% had not been in their target INR range in any of their last 5–10 sessions. 141

Greater patient empowerment

Patient empowerment is associated with improved clinical outcomes, 144 and has been made central to the current focus of the NHS. For a patient to be empowered, it is necessary that he or she has sufficient knowledge to be actively engaged in treatment decisions, in the setting of treatment goals and in evaluating the outcomes. Specific to the stroke prevention efforts required in AF, patient education and involvement in the management of warfarin therapy have been shown to reduce the risk of major bleeding. 145 Patients cannot become empowered without access to information which needs to be accurate, consistent and easy to understand. Limits on the accessibility should also be removed wherever possible by addressing different levels of literacy, by not relying on a single format (e.g., print or internet) and by making the information available in appropriate languages.

Barriers to patient empowerment extend far beyond the accessibility of information; they include factors such as time pressure on healthcare professionals, their misperceptions of patient needs and poor continuity of care between healthcare professionals.

Limitations of current treatments

The limitations of current treatments represent a significant challenge to the effective reduction of stroke risk in AF patients. Among the group of patients who are diagnosed, and who would benefit from warfarin, nearly half don't receive it.119  And that those taking warfarin, are only benefiting from reduced stroke risk, with no increase in bleeding risk, for about half the time. 143 As we have see in earlier sections, there are many drawbacks with warfarin and almost all of these can be traced back to the narrow therapeutic range and the ease with which lifestyle choices, foods and other drugs can push blood levels outside of that range.

There is clearly a need for new therapies that treat AF, prevent blood clots and prevent AF-stroke without the inconvenience and disadvantages of warfarin and aspirin. Understandably, AF patients currently taking anticlotting therapy are all to aware of this need. When surveyed, 68% of chronic AF patients expressed their interest in new anticoagulation drugs for which routine monitoring was not needed. 151

Progress in this area of new therapies is discussed in more detail in the earlier section but new anticoagulant drugs are in development. Available clinical data suggests that some of these new drugs might match the stroke risk reduction of warfarin while being convenient, having more predictable effects and a better safety profile. These agents they have the potential to increase adherence to therapy and to guidelines, and most importantly to the number of AF patients at reduced risk of stroke.

Incomplete knowledge among healthcare professionals

The importance of patient empowerment has been stressed already. Unless healthcare professionals are equipped with a high knowledge of AF-patient management, it will remain almost impossible to engage patients in decision making and target setting for their own management.

Benefits of current treatments to prevent stroke

The reasons for poor adherence to guidelines have been reviewed in earlier sections. Many of these reasons are rooted in the degree of understanding and concern that physicians have about the safety and effectiveness of warfarin. We have seen that doctors both underestimate the benefits of warfarin and over estimate the risks. There is also evidence that the safety of aspirin and effectiveness is overestimated by prescribers. This highlights an urgent need for improved awareness and understanding among physicians of the existing antithrombotic treatments and their essential role in the prevention of stroke among AF patients.

The barriers of low awareness and knowledge among healthcare professionals is also evident from survey data. Physicians have reported that increased training and availability of consultant advice or guidelines specifically on managing anticoagulation therapy would increase their willingness to prescribe warfarin. 153

Evidence also suggests that healthcare professionals need greater awareness of their patients’ ability to retain information at the point of diagnosis, as well as greater insight into the negative effects that the symptoms of AF have on patients’ lives.

Provision of information

There is a large amount of information for patients to absorb in one consultation with the physician. Physicians need to understand the enormous value of supplying written information covering critical advice and facts, and that this is vital to ensure patient understanding and engagement. Physicians also need to revisit this information in subsequent consultations to confirm and reinforce patient understanding so that patients can become involved in the making of informed decisions about their care.

Physicians need also to recognised the negative impact that symptoms are having on patients lives. Failure to do this results in a feeling of abandonment and dismissal, which will likely undermine efforts to educate and engage the patient in the management of AF, achieving the opposite of patient empowerment.

Finally, efforts are required to ensure that always patients receive consistent and accurate information and advice that is uniformly specific to individual circumstances. This is only possible if there is effective communication between the various healthcare professionals involved in the patient’s care.

Management of patients receiving warfarin

There is evidence to suggest that patients adhere to warfarin therapy more closely when closely supervised or routinely managed by a dedicated anticoagulation service. 152 However, there are great differences between the many dedicated anticoagulation services provided throughout the UK, but a distinct lack of information on the effectiveness, quality and range of services that they provide. Physicians need to become aware of the strengths and limitations of their local anticoagulation clinic, and remain mindful of alternatives such as home testing. The roles of self-management and anticoagulation clinics is covered more closely at the end of this chapter under Access to care and information.

Awareness of treatment innovations

Novel anticoagulants currently in advanced stages of development may simplify the management of patients with AF. As with any chronic intervention, however, high-quality guidance and education for doctors, patients and their carers will be essential. Healthcare professionals will need to identify and manage eligible patients and know how to deal with emergency situations. Increased resources for education and rapid dissemination of information will allow faster introduction and uptake of new therapies.

Inequity of access to effective management

There is a considerable body of evidence that supports the accuracy and reliability of self-testing. 146 147 148 149. There is also high-level endorsement of home testing from NICE which recommends that it is considered in all AF patients in need of long-term anticoagulation, if they would prefer self-management. The Department of Health has committed to help fund home testing and self-management is very much in line with government strategy promoting patient choice and patient empowerment.

However, there are major disincentives for patients to self-manage their warfarin treatment in the UK. The testing machines are not available on the NHS, preventing their use among many patients who would benefit from a high degree of involvement with their own treatment. Furthermore, while the Department of Health has committed to funding the testing strips that the machines use, many Primary Care Trusts (PCTs) are not currently funding the strips in line with this commitment. The result is that the cost falls to patients who should not have to face this financial burden. Many patients simply can not afford the strips and become failed by the system responsible for their care. This situation also creates imbalance and ‘postcode prescribing’ where patients in one part of the country are denied access to a therapy which is provided routinely elsewhere.

There is need not only for agreed standards of care and service from anticoagulation services, there is also need for much greater consideration and support of home testing for those patients likely to benefit. When the risks and benefits of home testing are properly explained to patients, nearly all (94%) find the option to be acceptable. 147 In a study that investigated the role of self-testing, 87% of patients reported that they felt it to be straightforward and that they were confident with the results they obtained. Research from outside the UK has also indicated that cost benefits might also be possible with home testing. 155

In further support of home testing and patient empowerment, there is general agreement among both primary care physicians and specialists that anticoagulation therapy is best managed by general practitioners, rather than hospital doctors to ensure optimal access to, and continuity, of care. 153

Anticoagulation clinics – a potential educational resource

Anticoagulation clinics may be run from a hospital or attached to a primary care practice. They have sometimes been considered the gold standard of warfarin management 152 helping to increase the time that a patient’s INR values are within the target range, improve the overall cost-effectiveness of therapy, increase patient adherence and provide valuable information for both healthcare professionals and patients. 150 154 However, information of the quality and range of services of these clinics in the UK is poor. When the effectiveness of dedicated clinics is compared with home-monitoring, the results are positive for self-testing. 149 Self-testing also avoids much of the time and financial commitment required to make frequent journeys to the clinic, and it frees patients from feeling a need to remain close to their clinic at all times. This can interfere considerably with daily life as patients avoid travel and holidays because of such fears.

If patients are referred to an anticoagulation clinic, communication between all the healthcare professionals involved is crucial: assigning one part of patient care to an external clinic can weaken the relationship between the primary care physician and patient and may lead to disruption of care if communication breaks down. 152 Therefore, healthcare providers may need education and support in ensuring a seamless transition between the different strands in the patient pathway. As management of patients receiving anticoagulants evolves, anticoagulation clinics will need to adapt. 152 The organisation and running of anticoagulation clinics might gain cost and efficiency benefits through the adoption of technology. Computer programs to calculate the required dose adjustment of warfarin have been found to perform just as well as clinic staff. 157 158 Anticoagulation clinic staff may have an increasing role as educators and coordinators of anticoagulation therapy, providing support and communications links for other healthcare providers.

Moves towards patient-centred care

Access to, and the quality of, management of patients with AF is also likely to be greatly improved by a move to more patient-centred care and patient empowerment. Under current Department of Health policies, the consideration of patients’ needs, preferences and concerns relating to overall health, rather than just to a specific condition will become increasingly important. Although a patient-centred approach is widely advocated, it is not always implemented. 159 Instead, health care is typically centred on treating the disorder, rather than considering patients’ individual needs. 159 160 There is evidence that anticlotting therapy tailored to patients’ preferences is more cost-effective than giving the same therapy to every patient. 109 There is therefore a need to provide physicians with further education on the benefits of patient-centred care and with support in implementing this approach locally.

Interruptions in the continuum of patient care

Continuity of care, involving timely communication between healthcare providers, is essential for high-quality care. As the provision of health care often involves several different service providers, continuity of care is defined as ‘coherent health care with a seamless transition over time between various providers in different settings’. 162 By empowering patients and adopting a patient-centred approach to management, many factors that interrupt the continuum of care can be identified and eliminated.

Clinical research supports the need for an optimised continuum of care. In one paper, the defining characteristics of an ideal continuum were established; the seven Cs) of optimal continuity of care. 162

  1. Regular contact between patients and healthcare providers.
  2. Collaboration between healthcare professionals and patients in educating and ‘empowering’ the patient.
  3. Communication between healthcare providers.
  4. Coordination of the multidisciplinary teams involved, with clear identification of different roles.
  5. Contingency plans in the form of access to healthcare professionals out of hours to answer questions and address concerns.
  6. Convenience – achieved, for example, by avoiding the need for patients to keep repeating information and by considering home monitoring.
  7. Consistency of the advice provided by different professionals and adherence to clinical practice Guidelines.

The close monitoring required in patients receiving warfarin therapy can be problematic in ensuring continuity of care. When patients are transferred to other healthcare providers or to different settings, such as during hospitalisation or at discharge from hospital, critical information can be lost. Comprehensive, timely and appropriate discharge information is essential – possibly in some portable format 163 – so that the primary care practice has all it needs for appropriate follow-up care. Insufficient discharge information can contribute to hospital readmission. 164 Education of carers also plays a key role in the success of therapy, and the availability of a healthcare provider to answer questions and address concerns is likely to improve continuity of care.

Conflicting guidelines and GP targets

When guidelines provide conflicting information or when outcomes rewards fail to motivate treatment in accordance with guidelines, there is significant opportunity for patient management that falls short of what is ideal. In the UK, healthcare providers have a choice of two conflicting sets of authoritative guidelines; those from NICE and those from ESC.

It is essential that the planned review of the existing NICE 2006 guidelines are updated to reflect not only the existing ESC guidelines, but also to reflect improvements that the authors of the ESC guidelines are already considering.

It is also necessary to change the current QOF scheme that rewards physicians for achieving targeted patient outcomes. In the previous chapter, this topic was addressed in more detail, but the current scheme provides virtually no motivation for GPs to put patients on warfarin in accordance with either the NICE 2006 or the ESC 2010 guidelines. Proposed changes to this scheme would help eliminate this barrier to effective AF patient management.

Summary of current challenges

In summary, numerous challenges remain in the prevention of stroke in patients with AF. Increased detection of AF by physicians is vital, and improved education is needed among patients and healthcare professionals on the benefit-to-risk profile of aspirin and warfarin, and on the optimum management of patients receiving warfarin. Healthcare professionals need to be aware of new anticoagulants and other therapeutic strategies that are emerging, as well as advances in the treatment of the underlying AF. It is also vitally important to encourage patient empowerment and patient-centred care and ensure equity of access to advances such as self-management. Finally, improved adherence to guidelines, consistent recommendations between guidelines and collaborative approaches to the development of revised guidelines are essential, as are revisions to schemes that exist to motivate GP to achieve outcome targets among AF patients. All of these factors will contribute to the prevention of stroke in patients with AF.